hansjd in reply to Tall_Allen

Thank you TallAllen for your welcome and knowledgable advice. Much appreciated.

hansjd in reply to Patrick-Turner

Thanks for sharing your story Patrick. You're right, the only certainty is uncertainty, but there are many treatments currently available beyond ADT and RT (e.g. docetaxel, abiraterone, enzalutamide, Radium 223, Lut-177) and I believe (and hope) there will be many more in the not too distant future that can help to 'contain' this insidious disease. I remain positive : ) Dare we hope for a cure in the future??

Best of luck with the Docetaxel. I have found it to be pretty tolerable - not a lot of side effects. Day 3/4 after each infusion has been my hardest time - feeling flat both physically and mentally. The chemo regime included 4 x 4mg Dexamethasone the day before, the day of, and the day after the infusion. This cycle (my 5th) I decided instead of stopping the Dexa suddenly I would try tapering it off - first to 2 x 4mg / day for 3 days, then 1 x 4mg / day for 3 more days. The result: day 3/4 were much easier - no flatness - I have felt much better.

My understanding of the Docetaxel is that it kills cancer cells of all varieties, PC and neuro- endocrine, which to my way of thinking can only be good. As per several clinical trials, it has also been shown to extend survival when added to ADT early. My MO put it this way, "short term pain for long term gain", and really the 'pain' has been minimal. Hair has thinned somewhat especially my beard, but so far I have no neuropathy (my wife dutifully ices my hands and feet during the infusion) and I haven't experienced mouth sores (I suck ice cubes). These are cumulative side effects but as I have only one more cycle to go, I'm hopeful I won't experience them at all.

A recent paper says combining Lut-177 with Abiraterone or Enzalutamide increases the beneficial effect and is better done before Radium 223.

eurekalert.org/pub_releases...

So if you go down that route you might consider following that regime. But it seems to me you should give the Docetaxel a chance to work and potentially have a low PSA for months or years with that treatment first.

My guess - you have many more years ahead. All the best.

Hans

AlanMeyer in reply to hansjd

Hans wrote:

"... The chemo regime included 4 x 4mg Dexamethasone the day before, the day of, and the day after the infusion. This cycle (my 5th) I decided instead of stopping the Dexa suddenly I would try tapering it off - first to 2 x 4mg / day for 3 days, then 1 x 4mg / day for 3 more days. The result: day 3/4 were much easier - no flatness - I have felt much better. ..."

Your approach to this would seem to be in line with what is generally recommended for steroid administration. I think you should tell your oncologist about this and ask him or her to let you know if it works for others. A lot of doctors just ignore anything patients tell them but it will be interesting to see if the onc is willing to research and try it, and what results are obtained.

Best of luck with your treatment.

Alan

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CalBear74 in reply to Patrick-Turner

P-T

You have tried some alternative medicine but I did not see a reference to IP6 (aka inositol hexaphosphate, phytate, or phytic acid) or beta glucan. I urge your consideration of these complementary medicine strategies.

Some background:

I am a 76 year old caucasian, married with three children. I was diagnosed in Nov., 2012 with Stage 4 metastatic prostate cancer, with two pelvic bone mets, G 8. I was on intermittent (6 mos.) ADT until August 2016 when we relocated. And then continuous ADT was initiated after August when we moved to Tampa, Florida. My urologist here believes continuous is better; he also stopped the Casodex and I take Lupron only. I have a MO also with Florida Cancer Specialists.

In 2015, I changed in my attitude about being a compliant stage 4 PCa patient. I started researching complementary medicine treatment. (I am skeptical of "alternative medicine" regimens and favor those compatible with leading-edge radiology or chemotherapy solutions.)

Very importantly,

I have used since 2015 Dr. AKM Shamsuddin's, MD, Ph.D. (Univ. of MD Medical School) 2011 book (go to Amazon for “IP6 and Inositol…”). While still in AZ, I started using IP6 powder heavily for 7 weeks before my next appointment with PSA feedback in mid-summer 2015. My results surprised! my urologist and brought in a number that was lower (0.1) than he assumed would occur with normal disease progression. It caused him to ask for a DRE which he had not done for 2+ years. He could not palpate any nodules and this left him more puzzled enough to comment on it. I did not explain i was on IP6 as he had dismissed all natural supplements as a waste of time. I finally told him 6 months later. I should add that the pelvic bone ache I had been experiencing stopped.

How to take IP6? I take 6 scoops of IP6 powder in early AM mixed in cold water and shaken vigorously. IP6 should be consumed on an empty stomach (no food or milk. etc) for at least 2 hours prior. It should not be mixed with any drink containing protein as the IP6 molecules will bind to the protein molecules and lose their efficacy. After drinking your IP6 in water or a low sugar fruit juice (e.g., Ocean Spray Cran-Pomegranate) don't eat anything for at least a 1/2 hour. I repeat in the late afternoon. The dose I take would be termed "massive" by most people familiar with IP6. I have found it to be necessary to suppress the cancer and reduce the PSA. A major challenge with IP6 is dosing. This is a dose-dependent drug that varies with each patient's situation. I don't know what an optimal dose is for anyone. My suggestion is start with a large dose and very slowly reduce until your results are dissatisfying.

I also have used Dr. Vaclav Vetvicka's book on natural immunomodulation (Beta Glucan: Nature's Secret", 3rd edition.) and the Transfer Point company's Beta 1,3-D Glucan (#300) based on Dr. Vetvicka's research into beta glucan efficacy across brands.

Dr. Vetvicka recommends that if you take a dose of beta glucan daily (only one permitted as it is a very potent immunomodulator) it should be three 500 mg. capsules (Transfer Point's) WITH resveratrol and vitamin C. His studies of this combo therapy shows significant synergy occurs when these 3 drugs are combined.

These are my two major supplements. I recommend them to you. Provenge has made autologous immunomodulation very visible among PCa patients, but surprisingly few seem to attempt their own immunomodulation regimen. (I am not claiming they are equivalent therapies.)

I thought I had achieved a nadir in PSA in summer, 2016 when it was 0.4. But then in fall, 2017, possibly because of all the supplements I take, it dropped to 0.06. My Florida urologist was extremely surprised by this number. It repeated 6 mos. later.

I take other supplements but if I summarized those, this would be even more tedious. Good luck, P-T.

Your happy vegan, CalBear74

Patrick-Turner in reply to CalBear74

Well, the IP6 is interesting and I'll search a bit on it and Dr Vetvicka. It is hard for me to believe in alterantives and adjunctive non approved potions because there are usually no controlled trials and only anecdotal evidence that anything works. But where they do no harm, it is OK to take them to explore the possibility they may help or not help.

In 1980s I first tried Hatha yoga to improve my cycling, and it sure did, and the physiotherapist and chiropractors were useless. In 1993, I had some terrible bouts of back ache and neck ache from building work and a lady doctor who also did acupuncture had me sit in chair for 20 minutes with 4 needles and I was off the endone and back to work in ONE DAY after a month of dreadful pains and short sleep nights where none of mainstream medicine worked at all.

The neck bother repeated a couple of times and lady doc moved, but the practice referred me to another acu guy who has trained in China and he was like a wizard with a laser pointer, no needles. I still see him occasionally. he could not fix knees or cancer though. But these alterantive ppl are regarded and charlatans by many docs.

So some alts work, some do not.

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CalBear74 in reply to Patrick-Turner

Dr. Shamsuddin's text reports extensive, rigorous studies of IP6 using mouse models and rat models. These studies have been ongoing since the nineties. The bibliography in his book "IP6 and Inositol..." (Amazon) has a 100+ articles from journals cited. His colleague Ivan Vucenik at the Univ. of MD wrote an excellent chapter on the problems they faced getting the National Cancer Institute to fund a large scale human subjects study. The book is "Too Good to be True?". Her co-author is Dr. Kim Vanderlinden. Go to Dr. Shamsuddin's website for a short course in IP6: ip-6.net

Dr. Vaclav Vetvicka has more than 20 years of research and hundreds of published articles on beta glucan. The Japanese have licensed the drug beta glucan since the eighties for use in their hospitals to fight cancer. They prefer beta glucan derived from mushrooms and seaweed. Vetvicka's research shows conclusively that Transfer Point's Beta 1,3-D Glucan (#300) is more effective. He has done human subjects studies, some in the Czech Republic where he grew up. Go to vitawithimmunity.com for interviews of Dr. Vetvicka and numerous other physicians discussing cancer and beta glucan. It is a respected drug but not well understood by the average physician.

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